Silver linings (and inspirational dragon quotes)

I’m feeling less than creative this Monday morning, so I’m going with a somewhat meta title. (D’oh! it’s now changed)

Following up on last post: we’ve received word that Scarlett won’t be in the drug trial. It’s close to completion and all spots were filled. I actually found out about 10 days ago but needed some time to sort out my thoughts/emotions before posting. As always, some time in the mountains and a few long drives were very good for me.

If you know me, you know I always find the upside/silver lining, so here it is. Even though the trial was closed, the folks at NIH were kind enough to look at Scarlett’s scans and records very closely. They determined the drug could potentially and significantly help her (average tumor reduction in the study to date was approximately 31%). So, they suggested we apply for access to the drug via a compassionate care exception. They put together a huge packet for us and I’ve spent the last week working with Scarlett’s docs to figure out how to coordinate the application. It’s up to the drug company whether to approve it and then I’ll likely have to battle the insurance company. Thank goodness I took health care law in law school. Haha; see what I did there? Found a silver lining despite my hatred of law school ūüėČ

So, I suppose I’m still hopeful that we might have access to the meds without the NIH trial. This seems silly in the grand scope of things, but I’m a bit bummed Scarlett won’t get to see D.C. (NIH is in Maryland so I’d hoped for a few days away from hospitals to show her the Capital, etc.). I feel strongly about reminding my kids how truly extraordinary our country can be, and to me, D.C. is so inspiring. Many of you know that I value travel far more than things, and travel has been great therapy for my family. I’ve also tried to teach my kids that having something to look forward to often makes things a bit more bearable in the present. In any case, travel is up in the air for now. (My puns are so bad that I crack myself up).

Wow, sorry about that – I got way off track there with the travel tangent. Not the first time.

So, that’s where we are. Scarlett is feeling great and the kids are enjoying their summer. We try to up the playfulness a bit more in summer. Last night, we dyed the bottom of her hair flaming red (as she says: “the color is not just red, it’s Scarlet Red”). I’m trying to spend more time in sunshine, lakes, and lovely gardens. Simple pleasures. Which reminds me, thanks to all of you who keep me laughing. It’s truly the greatest gift and you can’t imagine what it means to me.

So much love,

This is going to be my motivation when I have to argue with insurance companies
😂< img src=””>

Be Kind, Be Courageous

Wow, it’s been awhile. I suppose no news on the blog is good news. ¬†But honestly, so much has happened in our lives and family in the past couple of years that I wouldn’t know where to start. (Don’t worry – I’m not about to belt out my best Eva Peron. But still, no tears needed). ¬†Please remember that I’m not a writer so this will probably have no structure and ramble a bit.

Dressed up as Wonder Woman on Nov 9th 2016 to cheer mom up ūüėČ

Scarlett is 10 now (going on 25). ¬†She just finished 4th grade and I’ve returned to the blog because many of you have asked what’s going on lately, and also because I think she’ll be helping me write it soon. She really is her own best advocate, ¬†and she’s an extraordinary kid. I’ve never heard a “why me?” from her. ¬†Her sense of humor is marvelous (I’ll see if I can upload the stand up routine she did for the Camp Korey Gala last year).

Anyhow, we have a motto in the family to always be Kind + Courageous. Both my kids take courage to new levels. ¬†In Scarlett’s case, it’s dealing with the uncertainty and challenges of NF while never being defined by it. She just rocks it.

So, where are we medically? ¬†Some of you may remember the rough time we had last year when Scar was getting dizzy all the time and having fainting episodes. We spent about 10 days living at Children’s trying to get answers. Finally, the neurology team determined that one of the two main arteries into her brain (!) was crushed by the neurofibroma on one side of her neck. Yup, Big Time Scary. ¬† But the body is an amazing thing, and it regulates and adjusts blood flow to the brain as needed. In Scarlett’s case, the other artery picked up the flow. ¬†It turned out she was having a variation on migraines due to this “unique” arrangement (thanks NF!) ¬†and instead of pain, it caused severe dizziness. We’ve been able to control it with migraine meds and she went back to her happy, non-dizzy self. ¬† So, we’ve been stable for awhile. Some of you may remember that “stable” is my favorite word (besides “euphemism”) ¬† ūüėČ

I suppose the biggest potential news is that we are trying to get into a drug study that has produced pretty significant results on plexiform neurofibromas. ¬†I hate to make this about me in any way, but this is a tough one for me. ¬†I was shattered after the 2012/2013 drug trial, and I don’t shatter easily. ¬†About 6 months ago, I was sitting in a New York coffee shop with my best friend and she asked what the worst part of this experience with NF has been. And it was one of those “oh sh*t, here comes the sob” moments. ¬†Spontaneous sob. In public. In New York. ¬†I stress the NY factor because there are LOTS of people in NY and I HATE crying in front of other people (but I’m working on that one). ¬†Because, at the end of the last drug trial, when I sat in a doctor’s office and heard him say “the drug didn’t do what we needed it to”… for me, that was the end of Hope for awhile. And if you know me, you know I am ALWAYS Glass Half Full. ¬†But at that moment, I wasn’t even holding a glass anymore. ¬†And you know what was harder? ¬†Sitting in an airport waiting to come home and having to explain it to a 6 year old. ¬† Brutal. ¬†Do you remember the book I made for her about participating in the trial and how she could help other NF kids around the world? ¬†I still can’t look at it. But you know who said “okay, well.. at least we tried” and then moved on? Scarlett did, because that’s who she is. She has a huge, beautiful life to live, and jokes to tell, and people to love. ¬†She just keeps truckin’ ¬†(ha ha, who’s picturing mud flaps right now?)

So yes, I’m frightened of the disappointment again. ¬†But it’s reality check time and it’s not about me. The reality is that we will do whatever it takes to blunt the impacts of NF on her life. And a drug with the potential to shrink the tumors would certainly do that. ¬†So, however it is you request help from God or the Universe (prayer, dance, etc) please send one out/up there for us about the drug trial.

Of course, if you know me, you know I always hope for the best but still plan for the.. not best. It’s the ¬†romantic tragedist in me. (If tragedist isn’t a word, I’m claiming it right now.) ¬†So, if we don’t get into the drug trial, the surgeons at Children’s want to do another airway surgery and possibly surgery on her eyelid. It’ll be the first eye surgery (all the rest have been in her throat/airway). ¬†You guys will love this: when we first saw the eye doctor about possibly lifting the eyelid, Scar didn’t say a word. Finally, after more silence in the car on the way home (super unusual for her) I asked if she was scared about the surgery. Even more silence. We were stopped at a light and I looked over at her and saw a huge tear roll down her cheek. And do you know what she finally says? ¬†“Why do they have to fix my special eye? I like that it’s special”. ¬†That’s so Scarlett. So, we agreed that they won’t try to make it look like everybody else’s eye, but will lift it enough to help her vision.

One other thing, and I mention it to thank some extraordinary people. Unfortunately, besides the medical issues, NF causes some pretty tough learning challenges. ¬†And I’m convinced that if angels exist, they are the teachers helping our kids. Scarlett has been blessed with unbelievable teachers and there are no words to express my gratitude. If you’re reading this and are one of her teachers, please know how priceless you are to my family.

So, that’s pretty much where things are right now. Thanks for reading this far. ¬†I admit that one of things I struggle with on this blog is tone. ¬†It always sounds so Debbie Downer, but if you know me and the kids, you know that we spend 90% of our time laughing and cracking each other up. There is no misery. ¬†Right now we are waiting for the sun to set so we can watch fireworks, Boomer is sedated, and I’m hoping the neighbors’ arsenal doesn’t burn the house down. ¬†So, in the words of Carl Spackler, I got that going for me ūüėČ

So much love to all of you- Shan

Adorable kid and sedated puppy – Happy 4th of July!

me with Wonder Woman (x2)